An Appreciation of my Tokens

After almost two weeks of being cooped up in what I can still not decide is Winter Wonderland or Homebound Hell (I'm leaning towards the later), I have finally designed a sanity system. Using a token board dug up from Behavior Consultants Gone By, I have devised a simple, effective way for Sayer to "earn" his way onto the computer.

Here's how it works: Sayer loves to look at water slide, roller coaster and marble maze videos on YouTube, like this one. (That counts as developing keyboard skills, right? Maybe not.) So, we are leveraging YouTube privileges to motivate Sayer. Before doing YouTube, he has to earn five tokens by completing five tasks. He gets a token -Tiddley Winks with Velcro - on the board for each task he completes.

Yesterday I used a written list of tasks that he checked off, similar to the schedule he uses at school. These were:

1. Empty dishwasher
2. Read a chapter of book from school. His current book is about metamorphosis and Sayer has a point, Chrysalis DOES sound like Christmas!
3. Watch a new DVD from the Scholastic Video collection, a Hanukkah gift
4. Put clean clothes from laundry basket into drawers
5. Make bed

This positive reinforcement strategy works great, much better than the "three strikes you're out; no YouTube tomorrow!" threat. For one thing, we kept loosing track of the strikes, and for another, with tokens we make sure that Sayer does homework and chores regularly. It also reinforces behavior strategies used in his class room.

And most important of all, I really don't WANT to take away the YouTube privilege because snowy days (and, to be honest, many clear days) are long and when Sayer is on YouTube I can, well, do stuff. Like write this blog post on my lap downstairs, which I am doing right now.

On balance, it takes a bit of forethought to come up with the list of token chores, and I try not to do this BEFORE my first cup of coffee. And Sayer still needs some supervision for most tasks. But, the token system still pays back in dividends. Unless we have another power outage...

A Letter From A Child with Autism

This letter was posted on General Hysteria, a great blog written by Mia about her experiences mothering Alex. The letter describes specifically how individuals with autism and other disabilities perceive holidays and holiday visits.

Mia is not the author - the author is unknown. The introduction to the letter is Mia's, and the photos are of her adorable boy Alex. I'm sure she'd love to know what you think and I encourage you to visit her blog.

A Letter From A Child With Autism

A few things to say about this post:

1) It's long, but please read it; copy and paste to for yourself if you wish
2) It's worth the read to understand any child that lies anywhere on the Autism Spectrum and many children that have any sort of developmental delay, brain insult (like Cerebral Palsy) or the mixture of any number of disabilities
3) It breaks my heart because I feel as though it's my son speaking to me
4) The author is unknown

All pictures are Alex

"Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as a Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: Some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to.


Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I can not sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and allowing is something that a lot of people with autism have trouble with. I am not being picky--I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.


Don't be disappointed If Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.


Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this Celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!

From,

Your Autie/Aspie/PDD kiddo"

Sleigh bells ring - and he IS listening!!

"That's a Christmas song!" Sayer exclaimed the other day in the car. And so it was. A true confession - I am born and raised Jewish gal who harbors a secret love of Christmas/Holiday music. I just always have; I actually look forward to those 36-hour Christmas Eve/Day radio marathons. I feed my addiction mainly in the car, listening to the radio churn out "White Christmas," "Grandma Got Run Over by a Reindeer" and the like. I only listen without the presence of my husband, Dan, or older son, Jacob, who both call holiday music "drivel."

Back to Sayer's reaction - I was actually impressed that Sayer recognized the song on the radio as a Christmas song - it shows that he can generalize songs he hears in school, at department stores, and so on. I hadn't really thought he noticed that closely what is playing on the radio; and the fact that he does is a good thing.

How much I have changed since the time when Jacob was young, when I was indignant when a Christmas song was played at a school winter concert. When Jacob was young, I clearly told his teachers that he was Jewish, and we would prefer that he not draw or write about Christmas trees or Santa Claus. I did volunteer to help his class mates understand and celebrate Hanukkah, and so I have contributed more dreidels and pennies through the years than I care to count.

Now, I pick my battles, and pick them carefully. This month, when Sayer brought home a December calendar with his drawing of a Christmas tree, I was a bit taken aback - oops; gotta tell the teacher he's Jewish. But, actually, I was more thrilled that:

a) He has learned how to draw a tree (representation drawing is still an "evolving skill") and

b) His teacher thought of having the kids do a calendar with the school schedule on it for us to share with Sayer. Very handy, since we can point out exactly when winter break begins.

Instead of being annoyed, I simply wrote a note saying Sayer was Jewish and he loved to talk about Hanukkah. I also offered to help the class get into the Hanukkah spirit. So, it's off to the party store to stock up on dreidels for his class mates, but it's all good. As long as I can sing along with Burl Ives, Eartha Kitt and John and Yoko, I'm fine with it.

Our kids in college - Is it possible? Is it affordable?

Thanks to mom "K" for sending me this ABS News video clip about Chapel Haven West, a two-year residential program for young adults with mild developmental disabilities that features a partnership with the University of Arizona-Tuscon. Participants have the chance to attend university classes, with support.

This sounds like a great program; unfortunately, according to their web site, the yearly program cost for 2008-09 is $52,500. Ouch! I scouted around the web site for resources on scholarships but didn't find much - except a reference in their annual report to a scholarship fund. Perhaps government funding programs (if they are left) can be applied towards the cost of such programs? Let's hope I overlooked something!

While googling for information about this program, I did come across a great annotated resource list on issues for young adults on the autism spectrum, from the Anabaptist Disabilities Network website, " Asperger Resources for Young Adults." You can access this list on the Asperger Syndrome page of the Network web site (on the right). The list describes a number of programs similar to Chapel Haven; most are on the East coast or in the Midwest.

So, for those of us with children who could benefit from such programs - is it reassuring to know that they are out there? Is is depressing and anxiety-producing to know that they are out there but affordability is, well, let's just say - a challenge? How do you see it?

Disability in our perfect family tree? Some resources for acceptance and understanding

I have heard from a number of moms who experience exclusion and judgement from some extended family members. This can be a particular heart break during the holidays. Here are some resources that I hope can help:

The About.com: Autism site has some resources in this link: Your Advice Requested: Problems with Extended Family and Autism. The suggestions could be helpful for families of children with other disabilities, as well.

David Pitonyak's Imagine web site is a treasure trove of information about inclusion and acceptance of people with disabilities, particularly those with challenging behavior. Maybe some of the articles on this site could be part of our relatives' holiday gifts?

Jessica Kingsley Publishers is an independent publisher with a focus on autism spectrum disorders,mental health and counseling. They have a broad selection of books and resources, both practical and inspirational. One book in their catalog is: Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism and Professionals Share Their Widsom: This includes some essays written by grandparents and siblings: maybe ours can learn by example?

For some of us, the challenge of extended family acceptance of our children is complicated by cross-cultural issues. I couldn't find any quick and easy resources for that topic (do they exist?) but I can recommend one of my favorite books on autism and disability: Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker.

Roy Grinker is a cultural anthropologist, and his book offers a cross-cultural perspective on autism. He looks at how autism is perceived in countries such as South Korea and India. His take on autism in the United States is just as fascinating.Here is a summary. His web site also has a list of links. For Clark County folks, I have a copy I can lend out; let me know if you are interested.

If nothing else, my cruise around the web has reinforced my knowledge that we are not alone. This list is far from exhaustive; please let me know if you have other resources to add.

Cook from scratch? Scatch that -Just trying to cook!

Last Friday I went to a soup exchange and menu planning discussion. I felt like a TOTAL poser, especially since Dan made the pumpkin soup. I didn't have much to add to the discussion since our family's meal planning consists of a rotation of Trade Joe's frozen entrees, a stir fry, hamburgers with french fries and ....repeat.

I can't cook, let's just get that out of the way right now. Dan still recalls the one and only meal I cooked for him when we were dating. It was a soggy vegetarian lasagna from Mollie Kazan's Moosewood Cookbook. I managed to simultaneously over-cook and under-cook this dish.

Dan, on the other hand, used to be a cook at the housing cooperative he lived in while going to college in Berkeley (wow, could that sound more hippy-dippy?). Anyway, once I convinced Dan that it was just the two of us, not two dozen of us, we got into a groove where Dan did most, OK just about all, of the cooking. This has worked until it stopped working.

One of the most challenging aspects of getting older is realizing that the old systems and habits we have gotten used to are no longer working, and need to be changed. Dan now works one hour away a few days a week, and telecommutes the other days. On the days he drives to work it doesn't really make sense for him to rush home and cook a meal.

Nowadays, I can put together spaghetti and meat balls; by that I mean frozen Trader Joe's meat balls, canned sauce and spaghetti (we use whole wheat, do I get points for that?). I can also cut up a mean salad, but I'm not much use beyond that. I've always found it a challenge to go through the sequences of cooking; I can't even explain it, but having Sayer running around certainly doesn't make me more eager to try.

At our soup exchange discussion, the other women had some great ideas about using the Internet to find and keep track of recipes, organize meals, make shopping lists and so on. These ideas intrigue me - here I have been perceiving the computer as a tool to avoid meal planning not abet it! I'm ready to step up the meal planning and increase the variety of our dinner diet.

I want to use the inspiration from these other healthy, organized cooks to implement real and lasting change in our household. All too often, I get over eager and burn out. That's not just me, right? In my "must change everything right now" mode I would bring Dan four new, complex recipes to try all in one week. This would overload our kitchen, our taste buds and our patience and we would then revert to burgers and fries in frustration. Whew! I'm exhausted just thinking about it.

Instead, I am using this blog to hold me accountable to these two concrete and measurable goals (aha, my grant writer self comes out). I commit to:

1. Find one soup or stew recipe a week for Dan to make. Eating the yummy soups I brought home from the soup exchange reminded me how nice a homemade, hearty soup is. In summer, I will find one dinner salad recipe per week.

2.. Pick another NEW recipe for us to try at least twice a month. I will seek input from Jacob and Sayer, and remember that we have to at least double the recipe to adapt to teenage boy portions.

What I need from you, readers is to encourage me and hold me accountable. Our family will start this in December so please ask how we are doing. We won't give up our cornmeal frozen pizzas or salad in a bag, but we'll try to reduce their place in the rotation.

And if you want some great healthy eating tips, recipes and inspiration, go to Minda's Eat Well, Be Well web site. Minda is a Camas-based nutritional therapist who hosted the soup exchange I attended. Her site has a great resource list, and a link for you to sign up for her monthly newsletter.

I hope you all have a great Thanksgiving surrounded by family, friends and fresh food. Oh, and maybe some organic chocolate turkeys.

Cooties: How quickly we remember?

Can I Sit With You? - The Stormy Social Seas of the Schoolyard is an interesting if at times heart wrenching web site that solicits and prints stories written by "grown-ups" about being left out, bullied and otherwise marginalized in their childhood. Here is the mission of this site in the organizers' own words:

Mission Statement

Can I Sit With You?

Could more stress be crammed into fewer words? Though to some people this phrase means merely, “Yay, new friends,” to a lot of us it means instant school anxiety flashbacks. And possibly an intense need to crawl into a hole, or vomit.

Dealing with the other kids at school was complicated even if you didn’t have a label. For those of us who were socially awkward, culturally juxtaposed, same-sex attracted, gender-cocooned, income-challenged, “weird” sibling-saddled, differently abled, atypical looking, religiously isolated, on the autism spectrum, or who somehow just didn’t fit in, it could be brutal. Even though most of us eventually developed coping strategies, grew up, left school behind, and tried not to think about how much that time in our life sucked.

Until some of us starting having our own kids. And saw those kids start to flounder, saw them start fretting about how to fit in. Aiigh! What to do?

Well, we don’t know what most people would do, but we’ve decided to take action. We want to help our kids. We want to give them some ammunition, or at least some mental armor. We want to show them that almost everyone has been mystified or terrorized by the schoolyard social scene, though for different reasons and in different ways. We want them to see that their angst is both universal and timeless. We want them to know that other people totally understand.

________

The purpose of the Can Sit With You is two-fold: To provide a forum for folks to write about their school experiences as described above, and to raise funds for SEPTAR, the Special Education Parent Teacher Association for Redwood City. The site publishes and sells compilations of these stories, and when web site readers click on ads or buys recommended books, SEPTAR earns money.

A look around the SEPTAR site shows what amazing things a group of parents of kids in special ed can accomplish. It inspires/intimidates/brings out the green-eyed monster for those of us involved with local groups whose activities and accomplishments are more modest. I truly commend the parents in this group, and it is always good to see what other Special Ed PTAs out there are doing.

So, kudos to this Redwood City group,and maybe we can all click on an ad or two to support them. And if you would like to submit your own school story, check out the Can I Sit With You? submission guidelines.

Finally, I'm interested to know how the Can I Sit With You? stories resonate with you. Please share.

Inclusion - it's not just for kids....

My last post, Can there be perils to over inclusion??, talked about inclusion and exclusion of our kids with special needs. But, it's not just our kids but also us who experience inclusion or exclusion among peers.

As other moms take for granted the accomplishment's of their children, we marvel at the small, often unnoticed strides of our own. When our kids "lose it" we never know if we will receive understanding glances and an offer to help, or disapproving stares. Often, we can feel on the side lines and on the margins.

The author of the blog wrongshoes.com - a mother with Asperger's syndrome writes about feeling on the outside of a group of moms in Open letter to the chatty moms at the gymastics class. I found it a wonderfully written snap shot, and I imagine we have all been there at one time or another - perhaps over and over!

I know that for me,sometimes I find comfort and "normalcy" when I spend time with parents of "ye 'ole typical kids," while at other times I feel like an impostor. For example, last night I went to a parent meeting for Jacob's high school magnet program, directly from dealing with a tantrum of Sayer's. Partly it was a relief to debate the merits of science internships versus engineering summer college programs, but I also felt somewhat detached. Part of me just wanted a martini, to be honest. Luckily, I had one after with a fellow magnet mom (brilliant idea "DW"!).

I guess I'm still dealing with that feeling of bifurcation I talked about in my Why does everything have to be so bifurcated?? post last May. Wow, that was like, six months ago, and I still haven't resolved my ambivalence! Why is it that definitive answers came so much easier when we were in our twenties and thirties?

Feeling included? Excluded? Please share all.

Can there be perils to over inclusion??

Inclusion, inclusion, inclusion. As parents, we are encouraged by the "disability community" (if there is such a monolithic beast) to push for our children to be included with their peers in school, in recreational activities, in religious life and so on. Some disability inclusion web sites such as Disability is Natural and disability blog writers often disdain activities that segregate the disabled from the rest of the population, such as Challenger Baseball and Special Olympics.

However, when a child with special needs always follows an inclusion model in his/her youth, what happens when that child becomes an adult? I had coffee this week with my friend "D." Her family includes two sons on the autism spectrum. One is now about 20, and the other is in high school. "D"'s sons were fully included in school, and had few interactions with children with similar special needs.

What "D" has realized, however, is that her sons now resist spending time with other teens or young adults with developmental disabilities. They claim they are not comfortable doing so. This is turn limits their options for recreational and social activities as they grow older. For example, "D"'s older son refuses to participate in recreational activities for young adults with disabilities, such as Vancouver-Clark Parks and Recreation's Access to Recreation programs or Special Olympics.

"D" told me she never thought about the unintended consequences of full inclusion, which she said has resulted in "seclusion by inclusion." Her older son's "typical" peers are off to college, hanging out with their girlfriends or working full-time, while he is not. His isolation and discomfort with others like him are issues "D" didn't consider when her son was younger.

So, is there an answer? For us, a combination of inclusion and "disabled only" activities seems to be working for Sayer. I must admit that after talking to "D" I am more open to looking into Special Olympics and similar programs. I would love to hear from other mothers of older children with special needs. How is your child making the transition to adult hood? Is he/she finding opportunities for belonging and fun, and with whom? Have their been unintended consequences to your decisions in raising your child?

Should I fall behind, wait for me

We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walkin a hand should slip free
I'll wait for you
And should I fall behind
Wait for me


These Springsteen lyrics, for me, symbolize all that is right with the election of Obama for president. No matter your political affiliation, I hope you can agree that Obama will be a president who WILL wait for those who may, or have, fallen behind. Falling behind economically, falling behind due to cognitive or physical differences, falling behind due to discrimination and intolerance - I truly believe that Obama will set the tone for America that will wait for all of us to catch up.

This is my first post with a political bent, since I have learned that people of all political persuasions have children with special needs. I have learned this a few times, the hard way, at birthday parties and such (you know what they say about making assumptions...) But, maybe part of being in those middle years is saying, OK, "I Yam What I Yam" and while not obnoxiously flaunting my beliefs (I'll leave that to Generation Y), I will not hid them, either.

Here is what a few of my fellow bloggers have written about this historic election:

Barb at Awalkabout's weblog wrote Vindicated!
Karen at Midlife's A Trip wrote about the election through the eyes of her young niece in Peanut on Obama

And for those of you suffering from a let down after the election, you may have "Post Traumatic Obama Election Disorder", This video from the Onion describes the symptoms. It is a hoot. I can certainly think of worse maladies!!!

I've joined Facebook but shh! - don't tell my teenager

I just joined Facebook, even though I was strongly encouraged not to/banned from doing so by my teenage son. I did it because a few friends asked me to, and because with the election going on I can't really focus on work anyway.

I can already see how Facebook can be a time suck, what with looking up old high school and college friends and all. But, I did include this blog on my profile so maybe I'll get a few new readers.

However, I know I must keep in mind that Facebook "friends"are not the same as well, face-to-face friends. A recent essay in the New York Times magazine," Facebook in a Crowd" by Hal Niedzviecki, is a cautionary tale about the difference between the two. Hal decided to have a Facebook party in Toronto. He invited his 700 Facebook friends to meet up at a neighborhood bar. Although fifteen people RSVPed that they would attend, and another 60 said maybe, only one person showed up for a beer.

Hal describes that night better than I can, but to summarize - awkward. What is it about online etiquette that makes it so different from off-line etiquette? Over coffee with friend today (over real, not virtual, java!) we discussed how people express anger online in ways they would likely never do in person. And I think that people are similarly less honest about their commitments when they make them online rather than over the phone, or via those little RSVP cards with their stamped envelopes.

All this to say - I am now on Facebook so if you are, I guess let's be Facebook friends? I'm still working out how to make that happen, but I'll learn. Invite me over; I love invites!

The Longest Month: Or, Trick-or-Treat at last

Finally, the day has come. No more "28 days until trick-or-treat" or "Nine more nights until trick-or-treat." Sayer's concept of days, weeks and months is still emerging. He understands when a new month occurs, and on the first day of each month he eagerly prints out that month's calendar on Starfall.com.

The tricky part is, he thinks that once it is October, it is Halloween; once it is December it is Hanukkah, and so on. We have had to explain that Halloween is the very last day of the month. So, we have all heard the count down shuffle for quite a while.

And this is the first year that we have gotten a store-bought costume for Sayer. Not because in previous years I have labored over the sewing-machine making one [as if!!]. But, because of his sensory issues we have doubted that he would wear one. Instead, we have thrown on him a witches hat or Dracula cape; somehow improvising from the Bin O'Halloween - our plastic bin of aging ghoul make-up, tacky decorations, spider rings and masks.

This year I insisted he needed a costume to get candy, and at Target Sayer agreed to the Doctor costume. Spiderman I'm not sure he gets, but he DOES know about doctors. Earlier this week we had a trial run, and to Sayer's relief his costume has no dreaded snaps, is soft and can be put on over his "regular" clothes. Will he wear it for more than ten minutes? We we reach a milestone? I'll report back.

One Halloween milestone Sayer did achieve is that for the first time he told us that his teacher and class mates would be wearing pajamas today. Pajama Day is his school's tradition to avoid the physical and emotional perils of wearing a costume at school. Sayer told us that he didn't want to wear pajamas, no thank you. Nonetheless, we were excited that he was aware of the option and is clearly "absorbing" what he is hearing in school.

I will have to keep such accomplishments in mind as we deal with the sugar rush that will come during and after trick-or-treating. Up until last year, there WAS no after trick-or-treating, since Sayer would knock on a door, get candy, say thank you and then stop and eat it all before continuing on to the next house. I suppose it is another milestone that Sayer is now able to stock pile and gorge. Ah, progress.

Workplace Disclosure and Children with Special Neeeds: A look at some research

Disclosure - my last post talked about how and when to inform people in the community about your child's disability. But what about people in the work place? Do you tell co-workers and Human Resources about your child's disability, and if so, when? Before you are hired? After? And how much do you share?

For those of us with less "traditional" employment, is our decision to work outside of the nine-to-five work world our way of dealing with the disclosure dilemma, by essentially avoiding it? How many of us work at home to optimize flexibility? And in doing so, are we letting potential employers off the hook?

Researchers at the Portland State University Research and Training Center on Family Support and Children's Mental Health have studied what they coin "Dilemmas of Disclosure" for both parents and human resource professionals. Their findings are summarized in the power point presentation: Caring for a Child with a Disability: Dilemmas of Disclosure for Parents and Human Resource Professionals.

This presentation includes some telling quotes from parents on the disclosure issue:

“Honesty with my employer. That has been the main
strategy and working very, very hard when life is
going well to make up for the times when I have to
be out from work.”

“I do try to be up front with selective people about
this. Some people I tell about my son’s emotional
disorder; to others I just say that my son has a chronic
illness that sometimes requires hospitalization.”

“All I’ve been able to do is explain to my employer
the reality of my life with an autistic child. Some have
understood and others have absolutely not!”

These Portland State researchers have also written a comprehensive article on the topic of workplace supports (and the shortage of them) for families who have children with special needs. This research in outlined in Disabilities and Work-Family Challenges: Parents Having Children with Special Health Care Needs on the Sloan Work and Family Research Network web site.

Fellow moms, please weigh in on this. If you are employed at a work place, how do you deal with the disclosure issue, along with the need for flexibility? Those of you with alternative work arrangements, how big a motivation is autonomy and flexibility? And for those moms who currently do not work "for pay" (because we ALL WORK) - would you be more willing or able to work if there were comprehensive protections and supports for employees who are parenting children with special needs?

On playing the "disability card": Discuss

Barb over at Awalkabout weblog had an interesting post recently, Have you played the "A" card?, about her experience calling in the "autism card" to get a bit of special consideration and accommodation for her children. Barb asks, is this OK? Her conclusion is that it is, since without some special accommodation her children would miss out on great experiences, such as rides at Disney World. Another point Barb makes is that we parents have plenty to deal with and could use some help from others now and again.

Barb also wrote about telling others her child has autism in response to glares and nasty comments: "And sometimes you just drop it to make the complaining person feel like a heel. (We’ll add up the karma points later.)" Are there any of us who haven't been there, done that?

I had a recent experience where I didn't deliberately "hide" Sayer's autism but somehow it didn't get written down on a health form. Sayer's right arm was hurting last Monday, and since he broke it last spring I took him in to an orthopedic clinic to have it looked at. It was a new place since we had to switch from Kaiser to new insurance ( just when I FINALLY figured out the Kaiser system, but that would be a different post).

When I registered Sayer for services I mentioned to the clerk that Sayer has autism (by spelling it = little pitchers) but I didn't specifically say to write it on his form. Well, about 30 seconds down the hall to the examination room the nurse could clearly tell something was "off". I guess Sayer can "pass" as neurotypical at the playground but not in a busy clinic. Maybe something about trying to locate all the urinals on the premises?

As soon as we sat down the nurse asked something to the effect of, what's the deal? I mouthed the word "autism" to her and she seemed visibly relieved that I was up front; she said "Oh, that's so helpful to know."I got the feeling other parents try to somehow hide or not mention their kid's special needs. I really don't understand why; I agree with Barb that our lives are challenging enough so why not take a "pass" when you can?

The nurse jotted "autism" on Sayer's form, and while it still took an endless amount of time to wait for the x-ray results, we did get some special treatment. It turns out Sayer did NOT rebreak his arm but it may be a growth plate issue so to be on the safe side they opted to put on a cast. Ironically, they offered to put the cast on in the private examination room but Sayer was QUITE determined to go to the "big room" to get his red cast.

All in all, the 2 1/2 hour experience seemed like an eternity, but we survived. So, how about you - do you play the disability card with your children or try to carry on as if all is "normal?" Or does your approach and reaction differ by the situation? Please share your stories.

The Victory of Defeat: Losing a game as a developmental milestone

Last Saturday Sayer and I met up with two other boys on the autism spectrum and their parents at Big Al's to bowl. The bumpers went up and they played. Sayer was most interested in seeing the ball come up the shoot after each play, yet he was the front-runner throughout the game.

On the other hand, his buddy "J" is what his mom calls "A sore winner and a sore loser, both." I had never seen his sore loser side, but as he was in last place he got very upset. Sayer ended up winning the game but wasn't interested in the score, especially as the next step in the outing was to visit the arcade and get overstimulated by the lights, sounds and crowds (goody!). Luckily, the arcade cheered "J" up,too, although he also did a good job of calming himself down.

Given Sayer's limited concept of competition, then, I was surprised and pleased last night when, for the first time, I had to "fake it" when playing a game with him. We were playing "Mr.Mouth" and flipping small plastic flies into Mr. Mouth as he spun around. I got the hang of it before Sayer did and he actually got frustrated that he couldn't get any in. In the past, he has not really cared on way or another.

So, I faked it and deliberately missed most of my shots. Parents of typically developing kids are cautioned about doing this but for us it was a GOOD thing that Sayer noticed my flipping finesse and compared it with his own. I gave him some tips on how not to "over-flip" and he eventually got in. The look of pride and satisfaction as he got those discs in was priceless!

Social Support: Do you get it via drinks or e-mail?

How do you get social support to keep going? How much is from face-to-face lunches,coffee dates or drinks with friends? How much is through blogs such as this, e-mail exchanges and list-servs?

For moms of children with special needs it is often easier to interact through e-mail messages or blog comments than to meet up with people in person. However, I don't think that electronic relationships can match those up close and personal.

When I answered a questionnaire for my recent high school reunion, I was asked to name my favorite activity. Jeez - it was hard to pick one. I responded something to the effect of "There are so many, like hiking with my family, and going to see movies, but having martinis with friends is right there at the top."

What strikes me now is that as I was answering this question it never occurred to me to include "reading and responding to blogs" or "watching You Tube videos e-mailed to me by friends." Now that I am back home, in my telecommuting bubble, there are days when I don't speak to another human for hours on end, or even until Jacob comes home from school. Yet I usually have dozens of e-mail exchanges.

And while Sayer has come a tremendous way in his communication skills, our exchanges are quite limited and often repetitive. We can discuss what he wants in his lunch box and if he liked music in school but our conversations are well, pretty basic.

For those of us who have children with special needs, working at home can't be matched for flexability. It is good for me to be there in the morning to get Sayer off to school , as in "there" and not in a preoccupied hurry. Sayer is more relaxed when I am relaxed. But, I need to find more opportunities for human contact on a daily basis. This probably includes the dreaded activity of networking (why does that term suck the life blood out of social interaction?). Any ideas?

How I Spent My Retro Vacation

Imagine, if you will, a week-end where you leave your family behind, along with your to-do list, compute, laundry room, and perhaps most significantly, your existing identity as a "special needs mom."

At my 30th year high school reunion last week-end I was not Carol Freedman, the mom and wife who goes to IEP meetings, chases Sayer in the neighborhood, and helps Jacob balances class work, sports, instant messaging and the need to visit ESPN.com on what seems an hourly basis. Nor was I Carol Freedman, the grant writer who creates budgets and crafts project descriptions.

Instead I was Carol Solow- I can't believe it's you! The high school senior plus 30 years who was carefree, funny, a bit gullible and a notoriously perilous driver. What a wonderful time I had. The "gang" I hung out with was all there, and we laughed as we struggled with jewelry clasps (when the eye sight goes...) and watched our cholesterol (egg white omelets at the diner - we HAVE become our parents).

And at the reunion, it was wonderful to see folks I haven't seen in - well, for most, decades. Memory is an amazing thing. Time after time, I was asked "Don't you remember when.....?" and I was like, huh? And again and again I would walk up to someone and say, "I remember when you...." and they would be like, huh? Put us together and all our memories were enhanced and expanded.

It was great to see that the clique walls really did come down. While there were a few people who I greeted who clearly had little clue who I was, there were just as many I couldn't recall who said "Carol Solow! How are you doing." Although we may be a "self-selected" group - people who are miserable may be less likely to attend a reunion- I was amazed at our resiliency. We have survived widowhood, 9/11 (one class mate is a NYFD fire captain; another a NYPD police man), brain tumors (that would be me), and more. But there we were, dancing the night away.

Although the reunion, after party and visit to the diner AFTER the after party were great fun, I had just as great a time the next day at the Mini-Mart street fair in Sea Cliff. The mini-mart is an annual tradition that started when we were teens, I think. As one friend said gazing at the teenagers congregating in clumps, "Remember when we were the punks at the Mini-Mart?"

So there we were, standing on the corner of a closed off street for hours (ouch!) sipping beer and hanging out. We alumni shared even more memories. When things happen so long ago they almost become surreal so it was good to get collaboration that I DID once see Billy Joel hanging out at a bar, and I DID go hear the Police play at a club in New York City [once again, I've forgotten which one...]

Because the reunion was held so close to Election Day some of us spent a good deal of time arguing politics, but in a good natured way. I think the passage of time makes it easier for me to have true affection for people whose political views are the polar opposite of my own - you know, wrong.

What I have learned, now that I am home, is that I need to nurture and keep a little bit of Carol Solow inside of Carol Freedman, at all times. I would love to make it back to the Mini-Mart more often but if I can't, the Mini-Mart and reunion memories will live on long in my heart.

30th High School Reunion: Spontaneity or Insanity?

Two weeks ago, if you asked if I was going to my 30th high school reunion I would have said "No way, it's not even on my radar screen." But, that was before I got a call from my longest-standing friend in the world (from kindergarten!), "J", asking if I was going.

No way, I replied. I was just in New York last April. It is 2500 miles away. I've got stuff going on here. But the lure of a free ticket from my VERY generous class mate "S" (thank you frequent flyer) plus a place to stay with "J"'s family, convinced me to go.

Unlike my trip last spring to the East coast, this one is a tad rushed. Last time I made sure Everything Was Perfect before I left. This time, I'll be lucky to remember to pack my pantyhose, wash Jacob's soccer jersey before his next game, and create a simple schedule so Sayer knows when I'll be back home.

But I think the short time frame is a blessing. I have little time to think of the excuses not to go, such as these gems on my high school reunion web site:

Excuse #1: I'm a different person than I was in high school.
Rebuttal: You're not alone, we ALL are! Let's face it, look at our yearbook, we could only have improved!

Excuse #2: I'm overweight.
Rebuttal: You're not alone! Don’t believe me? Please note that no t-shirt sizes are being requested!

Excuse #3: I don't look as good as I'd like. I (choose one more) am bald, have wrinkles, have saddlebags, have grey hair, and no one will recognize me.
Rebuttal: Guess what? You won't recognize anyone either! Don't believe me? Take a look at our yearbook pictures we all look like the "before" picture on an Oprah makeover show! Besides, that is what nametags are for!

Excuse #4: I'm not as successful as I would like to be. I'm not.... Rebuttal: You'd be surprised how much everyone has matured! We may be plump and wrinkled (see excuses #2 and #3) but we're not stupid - we know that money and success don't always equal happiness!

Excuse #5: I didn't know many people very well and I don't talk to anyone from high school anymore.
Rebuttal: This would be the perfect opportunity to change that!

You know what they say about being in your 40s...just when you get your mind in order, your body starts to fall apart!!! The only cliques you'll notice at the reunion will be the sound of your joints as you walk around.
So, if you're not in the best shape of your life, haven't become the millionaire you'd hoped to become, or don't feel comfortable with the way you look for some reason.....you are not alone!!

Is it true that we never really leave high school behind? I've decided to take the attitude that I am going to this reunion to see my closest buddies from those years. We haven't been together since my mother's funeral 11 years ago so it will be great to be together under better circumstances. As for all my other class mates, reconnecting with them (or not) will just be gravy.

I have been thinking a bit about how to describe my life in 30 seconds, the so-called "elevator speech." Just exactly HOW does one do that? I think I will just wing it. BUT I do have these key essentials ready to go:

a) A killer "little black dress"
b) Lots of business cards for this web site
c) My Ipod survival set, including recharger

So, think of me on Saturday when I'll be dancing to Billy Joel, Pablo Cruise, Boz Skaggs and the last remnants of disco.

A letter to Classified Camas Public School Employees

Dear Camas Classified Public School Employees,

I have seen your signs all over town. I get a lump in my throat each time I see them. Yes, classified work has value. Yes, classified workers care about our kids. You are not paid what you are worth, and I don’t buy the district’s argument that your pay is less than Evergreen or Vancouver school district because Camas is smaller than these districts. I am in solidarity with you, except for the “yet”….and the “yet” is about those seniority rights….

You see, my nine-year old son with autism is what the district calls a High Needs student. The para-educators (we call them “paras”) who work with high needs children like him gain valuable on-the-job training from the teachers they are assigned to. I have seen a number of you with great skills and a knack for getting our children to learn. I have seen class rooms where the paras and the teacher get into a great groove together.

Yet, each spring there is this mystical “bidding” meeting to determine the next year assignments for classified employees. From what I understand, this process is based solely on seniority. At this meeting, para-professionals choose their assignments for the following year. The position they are now in may or may not still be open for next year when their turn comes.

So, let us say that “Miss Betty” works great with Teacher Smith in the high needs elementary school class room. Teacher Smith has provided her with specialized training regarding communication tools, positive behavior strategies, learning techniques and so on. The two of them mesh and make each other more effective at teaching children and managing the class room. This makes for a smooth running class room where students learn and parents are happy. What’s not to love??

Yet, under current rules, “Miss Betty” will not be able to work with Teacher Smith the next year if she is “out bid” by another para-professional with more years of seniority, even if that para has worked for ten years as a play ground monitor but has never stepped foot in a special education class room (let alone one for high needs children.)

And this benefits who? Union members, I just don’t understand. The district has recognized this problem and is proposing a change to this system, which I will present here in their own words:

The second proposed seniority modification relates to Class III High Needs Para-educators and Class III Professional-Technical positions. These positions are usually highly specialized or student specific. Many of the positions involve high needs students. As such, they require particular training and/or skills. The district is proposing that these positions be awarded initially by the interview/qualifications process. However, once a person is assigned one of these specialized positions, he or she would have seniority rights for a similar position in the future. For example, if a high-needs para position with more hours opened, and a current paraprofessional in a similar position was interested, the open job would be awarded based on seniority.

Yes, I am union sympathizer and no, I of course do not want a strike. But I am also a parent of a special needs child and do not want union rules to directly interfere with the quality of my child’s education – which I have seen happen.

I am also a woman who supports the professionalization of women employees– and let’s be honest; almost all of the special ed paras in Camas are women. I honestly can’t understand why some of you would oppose a modification that recognizes and respects your special education skills and expertise? Maybe your union fears that this would open the door to a further crumbling of seniority rules?

Good luck to all of you in your contract negotiations. You can never be paid what you are really worth, but please consider accepting the school district’s proposed seniority modification regarding high needs para-educators.

Signed,

A Special Ed Mom

Resources for Building Friendships

My recent post on loneliness and belonging hit a nerve with readers so I'm following up with a few resources for building friendships.

Model Me Kids is a web site with DVDS that model social skills, such as Model Me Friendship This DVDis designed for upper elementary and older children with Aspergers or other autism spectrum disorders. We've gotten a few of these for Sayer and he's enjoyed them [that said, he tends to watch a video over and over and then he is "all done"].

The Model Me Kids web site now has a Social Network for parents, teachers and friend to share experiences about children with autism spectrum disorders. There are on-line conversations on topics such as "Is it Bullying?" " Adolescence/Puberty and autism" and "How do you teach your children to handle rejection?" I haven't sign up for the network; I'm nearing Internet/e-mail overload but I'd love to hear from another mom who has signed up. Let us know what you think.

Playtime with Zeebu is another friendship/social skills resource designed for children diagnosed with autism spectrum disorders, nonverbal learning disorders and developmental delays. This social and emotional skills building video was created by a local mom and dad, Kim and David Gallo. This music-filled video uses thought bubbles as a way to help children see that their friends have thoughts and feelings, and includes a Zeebu character puppet. The web site features sample video clips and a user guide.

Are there other friendship and social skills resources that readers would like to share?

Only the Lonely

Listen here to a moving commentary by a National Public Radio listener, Jennifer Hendrick, about how she deals with other parent's reactions to the behavior of her son on the autism spectrum.

Jennifer talks poignantly about something we don't hear about in IEP meetings - the impact of loneliness in the lives of people with disabilities and those who care for them. Professionals who work with our families don't always talk about loneliness either, or the importance of relationships for our kids.

David Pitonyak is one exception, he believes our children are often lonely and that it is very important that we build their relationships with family members and community members - that we have people in their lives who are NOT just paid caregivers or teachers. I encourage you to read a few of his articles on the importance of belonging.

Sayer loves to hear a list of people who love him in his life. We do this while he is lying under his weighted blanket while I squeeze him in the mornings, to help calm him down before school. I squeeze him while singing "So and so loves Sayer, so and so loves Sayer" as in "Mom loves Sayer, Dad loves Sayer, Jacob loves Sayer." I continue on to name relatives, friends friend's parents, teachers, and so on. If I forget any he reminds me, and he looks right at me and is so engaged during the whole list. I can tell it means so much for him to know there are many people in the world who love him.

What role does loneliness play in your family? Do you think that society isolates us and our children? How have you built relationships?

See my heels? I AM a working mother

This year, we have decided to try enrolling Sayer in after school care run by our school district, rather than private care givers. One important reason for this is that the husband is working from home more than he did last year. I work from home, too, writing grants among other things. So, its helpful to not have Sayer underfoot during our "working" hours.

Nervous are we putting Sayer into a care situation without a "one-one-one." The first two days "Miss Heather" was there to get him used to schedules, create visuals, give the staff some tips. While Sayer was there I worked on a grant deadline from the comfort of my home office. I didn't wear pajamas - I've never been able to work in those - but I did dress, let's say, casually.

But, when it came time to pick up Sayer I felt compelled to change into a skirt, to demonstrate that I am a BUSY WORKING MOTHER, not a slouch passing off her special needs kid. And I spruced up the next day, too. I have felt a need to say, "I am VERY BUSY WORKING ON A DEADLINE (which is true!) so need this child care, thank you very much.

Now, would I be doing this is Sayer didn't have autism? I have looked at the other parents picking up their kids; yes, some are in suits but others hardly look like they were enmeshed in corporate America. Maybe they have jobs that are informal, or also work at home. Or maybe playing mah jong - it's their prerogative.

Deep inside I know it isn't any one's business what I do when my child is in child care, as long as I pay my bill and he fits in reasonably well. But that other part of me feels a need to justify my actions. Does anyone else feel they have to "prove" they are worthy of services and treatment that others without "special" kids do not? Is it part of the 'ole "mommy wars" thing? Do you think that being a stay-at-home mom is more "virtuous" when you have a child who has disabilities??

Sayer doesn't go to child care on Wednesdays, but he will on Thursday. That day I actually DO have a meeting in Portland. When I get home, I won't change into a shorts and t-shirt; I plan to wait until after I get Sayer. I know I can't keep this up - for one thing I'll run out of clothes. Any ideas to help me "snap out of it"?

Happy 50th Brithday to "P"

HAPPY 50th BIRTHDAY "P" - A wonderful woman, mother, wife, advocate


A mutual friend told me that today is the 50th birthday of "P" a regular reader and comment-maker here. "P" - have a great day! Read about celebrity folks turning 50 in 2008 and you can see you are in good company. And here are yet some more famous turning 50-ites. This list include the bassist for R.E.M and Grandmaster Flash. ROCK ON!!!

Does anyone have any words of advice or encouragement for "P"? If so, send them along.

Praise be to the goddess of school

At approximately 8:13, a miracle occurred. The school bus came - early! - to pick up Sayer for his first day of school. He had his back pack at the ready with his new Dark Knight lunch box (yes, he chose it; no, he hasn't seen the movie.)

After a disastrous open house, the details of which I'll spare all, Sayer is ready and excited to be going back at school. Sadly, he keeps asking for "Miss W", a para-professional (teaching assistant) that I know won't be in his room this year. I didn't know he felt so strongly about her until he started asking for her as school approached. Oh wait - kids with autism don't form bonds - NOT!!

Out in the blogosphere, school has already started for kids in other parts of the country. Read about how blogger Brilliant Spectrum Child is dealing with the dreaded Picture Day. Barb over at Awalkabout's weblog is struggling to find social opportunities for her "Apsie" son who just started middle school - she could use some ideas. And the bloggers at Mid-Century Modern Moms have a number of back-to-school posts, including those on getting "typical" high school and college students going on their school year.

So, how are you spending the first day of school (which is actually tomorrow for some)? Are you doing the happy dance? Me, I'm taking care of a bit of business and then watching my TiVo episode of either Swingtown or Mad Men or - gasp - both!!!